Singing for the brain..my way

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Sunday at the Coalhouse a micro pub/Real Ale bar.   Open mike night every other Sunday starting at 3pm.  Home by 8.30 or 9pm!

Of course my friend Lynn and I visit this, our local to enjoy the atmosphere, have a drink and listen/join in with the excellent artists singing.

I sound like an advert don’t I, or a drunken mate trying to get you to join us for a jolly good time

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What I am getting at is that singing is good for the brain, and Dementia Choirs are an excellent way to enjoy a pleasure we can all do which is sing.  It stimulates lovely memories of music you have enjoyed as a teen/mum/dad, on holiday, a celebration, or a time in your life you associate with a loved one.   I am not talking war songs or music from the 40’s here, I am talking music from the 60s, 70s, 80s and so on.   As more people are diagnosed with a memory or dementia related illness younger it is important that music is age appropriate.

I am not keen on joining a choir, I don’t have a particularly good voice, not that matters one bit, but I think I don’t like the organised bit of it.

For me I like to hear a live band, or a live singer.   Music in the Coalhouse can range anything from folk, Snow Patrol to Creedance clear water, even a bit of Hendrix.  Now there’s my type of music at times!   To these I sing my head off!  Lynn and I are occasionally give a Tamborine and Maracas and we go for it.

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Lynn took a picture of me and my daughter singing, playing and having fun.  This for me, is my singing for the brain.  Suck it up Dementia singing loud and out of tune!!!

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So don’t stop going to the pub when live music is on, stay for as short a time as you want, choose an ‘open mike’ event, where singers with a guitar, or singer songwriters just get up and sing.   Staying even a short amount of time is invigorating.  If classical music is your thing, then how about finding lunchtime concerts?   I find it difficult to cope with loud noise or too much background noise, but this is something I find immensely enjoyable because in a small place the level of sound is usually pitched correctly and not enough to blow your ears off.  Everybody is singing, you are so engaged that any other background noise simply disappears.

So get your positive pants on and go for it …

Change of site name!

Some of you who read my posts may have notices that I have changed the name of my page.  It used to be ‘Before I Forget’, and I realised that there are so many pages with that name which may be more important than mine so thought of a new name.

My URL is http://www.handbagwarrior.com, the domain which I bought a year or so ago, and I identify with the name handbagwarrior in my passion for helping to educate my local town about living with Dementia. I sometime feel like a warrior trying to support my local community to stop being ashamed of the  diagnosis and to start looking at how people can live well.   So, for me the most natural name for my site is Handbagwarrior: Dementia and me.   It has been a long struggle for me to identify who I am now.  No matter how others see me, it is how I feel about myself that I needed to change.  For a long time I have felt lost as me, when you leave work because of illness you lose your identity initially and when your illness is Dementia it felt like all that I had been disappeared then.

Today I am firmly ensconced in my new community.  I am a handbagwarrior in bringing about change in how dementia is seen within the community, and the provision for younger people and those with early diagnosis.  I work hard networking and trying to change perceptions.  I have set up a peer support group ‘Lets Meet Up, peer support group‘, and am formalising the constitution for the umbrella group ofLets Meet Up’.  So under this umbrella is also Lets meet up Art and Social Group.  Constituting the group will enable us to raise our own funds with the sale of things that the Art Group can produce.  My next challenge is to find a permanent home for the group to meet in every week.  My dream would be to have an empty shop to open up a Community Hub in.  Somewhere that groups such as ours can meet on a regular basis, a place that can house information about all the groups and charities that are available in the area.  Lots of peer support groups look for somewhere to meet, so I don’t think it would be hard to fill the place.  I have already made some noise regarding this and fingers crossed this will happen within the next year.  Of course its not just me doing this, I do have a side-kick, Lynn B.  She is a tireless whirlwind! and we bounce off each other as we attend meetings, appointments and network together to achieve what we need.  We are the working group of Dementia Friendly Seaham so there is a cross over in our endeavours.

So, my dementia is very slow progressing and during this time I have a need to get done as much as I can within my community for other like myself.

So, that is why I have changed the name. 😁

Gill x

 

Dementia is so complex

Lots going on, a year of changes, a year of perplexity.

You can read any amount of literature on Dementia, what it’s like to live with it, how do you know if you have dementia, what are the signs, but there is not one source of absolute certainty showing a list of traits of dementia that everyone living with these brain diseases with have together.  Not one.  Each person experiences something different, each person may have one trait, but not another.  So what is a typical experience of dementia?   It is important to know that there isn’t a typical experience.

Thing is, we need to put symptoms, traits, diagnoses into lists, tick boxed so that we can make sense of whether this person ticks all the boxes to say they have a definitive diagnosis of this type of dementia or that.  We expect the neurologists, psychologists, psychiatrists to know how to make sense of what is happening to someone to say, yes you have X type of dementia.  They do their best with the knowledge that we have about the brain, which is relatively little.

Then who really understands the nature of how the brain works, or fail dramatically, or incrementally in the non academic world?  Sometimes we feel that because we know someone with Dementia we are an expert in ‘knowing’.  Perhaps it is because we know so little that is why we are so afraid of brain illnesses, we simply don’t understand what is going on and how to deal with it.

Remember when Cancer was a word that was spoken in hushed voices, if at all.  Way back then little was know and people died horrible deaths whilst surrounded by families tortured by the process.  Cancer.  There are treatments that cure now, there are treatments that enable someone to continue to live far longer lives.  We are not afraid to say the word or talk about it.  Dying is always hard, but now deaths are easier and can be be pain free.

Dementia.  Brain cells die through disease.  We think we know how but not why it happens, what starts it?  Why some people and not others?   Auntie Lizzie used to wander, but Iris never did.  What was the difference in the two people?   Auntie Lizzie born in the late 1800’s died in the early 60’s and had no real diagnosis..  Iris born in the 1930’s had vascular dementia and so it affected different parts of her brain and different functions.   Auntie Lizzie talked all sorts of nonsense, but Iris lost the ability to speak.  She was unable to tell those around her that she understood what people were saying about her, whereas Auntie Lizzie had little comprehension any more.  Iris was bedridden with the loss of mobility,  Auntie Lizzie used the wander the streets in her nightie.  Jack feeds seagulls and paints the most beautiful pictures, he goes to the pub on a Friday night on his own and meets his mates.  His behaviour can be inappropriate because he is unaware that you shouldn’t say some things out loud, or approach people/children you don’t know and interact if you’ve known them all your life.  His short term memory is non existent, and repeats himself over and over.   He has interesting stories of working down the coal pits, and as a welder on the oil rigs.  He is mid 50’s.  Sally lives with her husband and her two boys.  She is late 40’s.  She doesn’t handle money anymore because she doesn’t understand coins and counting.  She saw some long lost friends across the cafe and catches up with them like anyone would but then looks at the tea pot and the cup not sure what she is supposed to do and struggles with the order of how to pour a cup of tea.   She talks about holidays, politics, social activities happening in the town.  We laugh at how we can never remember each others names.

Then there is the marvellous Wendy Mitchell – Which Me Am I Today (blog) who has written a bookSomebody I Used To Know .   Wendy travels around the country talking about her life and educating how to live well with dementia.   How can she do that if she had dementia, some would say.

When you look at people living with Dementia it is easy to see how nobody appears to be the same – until the final stages of their life.   That’s it, that’s the reality of how people see dementia mostly.  The final stages.  ‘Oh my mother had dementia and it was awful, she never knew any of us, and just sat’.  ‘My father/husband got angry all the time for he had to go into a home, then he died’.  ‘She kept accusing me of stealing from her’.  ‘I lost my wife before she died, she slowly disappeared before my eyes’.

So you think you know what Dementia is because you know/knew/lived with someone who has/had it.   This is one person with one type out of the 150 so types of dementia, showing one or more out of a whole host of symptoms that may not be present in anyone else.  The combinations are endless.  Just as individuals have different personalities, so do dementias.

What I will say though is, becoming a Dementia Friends and Champion is something that all people should do, because even if it doesn’t explain all the dementias it does give an insight into how living with it can be.  Knowledge is the best form of action towards becoming prepared for the future, and inclusive in their own community.

Seven years on and my dementia is….what.  I don’t know.  Any different?  A little.  Progressed much?  not sure, a little.   People are questioning me; are you sure you have Alzheimer’s?   Do I have brain damage which is causing symptoms of dementia?  How does that make me feel?  Confused…totally and utterly confused.   New brain scans to come and then what………….

Feeling….stressed, despondent…but still wearing positive pants

th-2There are days when I feel I can no longer compete with organisational ‘experts’, with regards to what’s best for me and other people living with dementia.

That I can no longer stop others from deciding what us people living with dementia need, or want to fit their ‘brief’.

I get upset at how what I am saying, or my voice, is being blown away on a wind of ‘organisational’…I am sitting here trying to think what word to use but can’t quite get it.. constrictions, not fitting an organisational brief..

I am a strong advocate for people living with dementia to live with the positiveness of CAN DO.  Of overcoming the fear of their diagnosis and trying to do as much as they are able and then, going beyond that.  Having a say in what they want, what they will accept others doing for them, having a voice that is heard.  Trying something new, revisiting something they used to do.  Adapt what they want to do in a way that they achieve more than they thought they ever would.

The saying “There’s no such word as can’t” is so underrated.

At this point I had written a lot of why I was writing this and then realised that it was the wrong thing to do.  So what I will write instead is what I feel is important for Society/Communities/Organisations to understand.

If you are living with any form of MCI or PLWD (Person/People Living With Dementia), it is import to keep going.  Before diagnosis people had their own autonomy;  do you want to?  how do you want this to be?  give us some ideas that you would accept…  and such like.    After diagnosis this should still be the norm for any organisation when they are providing for us.   Most people working in organisations that provide some service for PWD have training.  NVQ Level 2/3 in Dementia, Social Care degrees/Masters, or ongoing comprehensive in-house training.   But, this training can never take the place of the voices of people living with dementia.  Our actions, ideas or input should never put behind that of an organisation.

It is always worth reminding society that PLWD once had careers and backgrounds that may have surpassed anything that any dementia provider has done.   All careers from shop assistant upwards are vital roles, but it seems that when someone is diagnosed everyone forgets what they are capable of, so if they are making a suggestion or offering to do something it is of no small consequence, because they may just have more knowledge than realised.

I really don’t want to be told what I cannot do, because I can try to do anything I like as long as it is legal and will not hinder any other process.   I don’t necessarily always want to leave things to the ‘experts’ if I can do something myself.

My thoughts are to step away from a situation for my own wellbeing, but this isn’t about me this is about all people living with dementia having a REAL voice.

 

“Nothing about us without us” 

Why is this a hard concept to get.   There are some truly lovely, and wonderful people wanting to offer people living with dementia activities in the community.

My word of advice as someone living with dementia:

  1. Know your community
  2. Make sure you do not do anything without having someone living with dementia to consult with.  If these are the people you are doing things for, then ask them first.

What if you have no one to ask?   What!   Why on earth are you starting things for people without reaching out to them first?   Do you see what I am saying here?  If you have no one to ask then you don’t know who is in your community who need your help in accessing activities or support.

Does your GP Surgery/Memory Clinic signpost your activity to people who are newly diagnosed living with a memory issue or dementia?   These are the people who need peer support and acitivities.  First build relationships with your medical centres so that they can tell someone newly diagnosed there is peer support for them to access. Otherwise they can feel that life is over, that there is nothing for them to do other than let their families take over and sit and make the best out of nothing.

Here in the North East of England, DEMENTIA is a word that no-one will speak.  It appears to be a word to be ashamed of.  Families hide it away within themselves, and will only speak it when talking about having had a member who had ‘it’ – Said with such sadness and dread that requires the voice to lower a little.

I am trying, so so hard to change this in my local town.  I am now having to tell people if you want to reach people living with an early diagnosis then never, have the word ‘dementia‘ prominently in your name or description.  Instead focus on the word ‘memory’ difficulties with the additive of dementia hidden at the end.   Do I think this is a bad thing? No certainly not especially in an area that is not yet open to being open about dementia.   Who cares what it is called as long as people can access it whilst attitudes change slowly.

At the moment I feel alone in being involved in starting support/activity groups up because I am yet to be put in touch with others like me living with this disease.  They are around because I am told they are…..and that is where it ends…  If it were not for the few wonderful people who are passionate about changing our town then I think it would be hopeless.

It’s funny because you can see the other small towns where they have groups for people with dementia that is not focussed on early onset/diagnoses, because their posters and wording is very professional like, and ‘correct’.   It is all about them doing things for us, and whilst that is fantastic, it is all encompassing and not for the likes of younger diagnosed people such as myself.

I was part of a conversation the other day that was being had about groups in my Town, and someone saying “what we need is a minibus to take people to other nearby towns to join in activities”.       NO, what we need is for someone to ask ME, and others like me in my town what WE want.   Sorry, did I shout there.   Anyway, there will be a group/meeting/for people who are living with diagnosis of memory difficulties, MCI, and dementia to see if we can first reach people who are around locally.  Small steps.

 

 

Confusion, viruses, overmedicating with Dementia

I was poorly earlier this week.  Monday morning and I woke feeling okay but it went down hill from there on.

61w3maLkAxL._AC_UL200_SR200,200_I went to take my medication and hesitated, the compartment for Monday morning was empty… had I already taken them?  I felt so confused.  I had a vague memory of thinking that I could take my Monday mornings medication from the original packs, or did I?  Why would I do that?  What reason would I have for doing that?  I couldn’t think what to do but decided that I had left out my original medication boxes for a reason and took my usual dose.   It is hard for anyone to understand how you can get so confused at either sorting out your medication or taking it, but when you have dementia confusion is all so real.   When you come across so normal to most people and look like you are in control of everything, conveying that you easily get confused is difficult for most people to believe.  But, on Monday I was confused.

Then I started to feel very sick , started vomiting and continued to do so most of the day.  My daughter arrived at lunchtime and called 111.  There is a stomach virus doing the rounds so I may just have been unlucky.  But, one of my tablets is for newly diagnosed overactive thyroid so doubling up on that didn’t help.  I was feeling too poorly to say I may have doubled up on my medication.   It probably was the virus but certainly wasn’t helped by taking too much of my medication.

I took advice the next day from a pharmacist and then my GP, and have sorted out Weekly Pill  packs for the future.

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This is a Nomad pack. Pre packed medication by the pharmacist

Never underestimate the possibility of someone living with dementia to be confused however well they live.  So, it helps to plan and put solutions in place to continue to live well without stress.   Most people already know about these weekly pill packs, but may not necessarily feel that they need to use them yet.  From my own experience, I am certainly going to feel more confident using them so that my occasional confusion won’t cause me to overdose on my medication in future.

 

 

I became a Dementia Friends Champion

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Last week I attended a session to become a Dementia Friends Champion.  I guess there were around 15 of us from all walks of life and jobs but I was the only person living with Dementia.  Obviously when I go places it is not something I announce to the world and his wife, why would I?

Why was I there?   I’ve already accompanied others when they have delivered Dementia Friends Sessions to both adults and children in local schools as part of working towards becoming a Dementia Friendly Community, with the steering group Dementia Friendly Seaham.  So it seemed natural that I could start delivering them myself at some point.  Becoming a Dementia Champion you start by committing to delivering one session in the first four months, and that can be to just one person (family and friends) or to a group of people (etc workplace).

Getting back to the information day.  I am not sure how I felt at first, listening to the facilitator talk about ‘people living with dementia‘, as it felt like he wasn’t talking about me.  It is a very strange place to be, listening and ‘learning’ to read a script educating others about dementia.  I somehow felt detached emotionally from the whole event, even though inside I kept thinking “this is about me”.

The script is necessary because it is about facts, and gives standard information that is not  personal but really informative.  Every dementia friends session given around the country will be the same.  This is how information works best and Dementia Friends Sessions are so, so important to educate as many people as possible about how, individually, they can make a difference.   It is as simple as being aware of how a person living with dementia can see the world around them.  Example – Black door mats = holes in the floor, or difficulty counting money at a supermarket checkout slowing everyone up.   Those are just a couple of small examples.  For me the real bonus is about people just learning to have a bit of understanding about the many difficulties of living with dementia.

So, here I am in this Dementia Champion Session feeling somewhat disconnected from everyone around me, obviously this was just a person introspection of mine and not in anyway about the people I was with.   I think that sometimes I just wish I was one of those people learning about dementia and not living it.

Anyway, it was a good day and I came away with the confidence that I could do this, I also caught up with people I had met before with was lovely.

I am looking forward to delivering my first Dementia Friends Session following the script, and possibly at the end when I finally ask the people attending ‘what someone who is living with dementia looks like?’  I will say “me“.